Patient story

Kassandra YarnellKassandra Yarnell

Hi, my name is Kassandra Yarnell, and this is my story. When I was one year old my mom found out I had PH. I’m sure they were scared — I was a very good baby, but one night I cried so hard I stopped breathing. My mom did CPR as my dad called the ambulance to come get me. They had to send me to three different hospitals before they could help me, and finally I ended up at New York. I have had a lot of surgeries, and I am on a lot of medicine — one goes into my stomach a (tube)! I also had to carry a backpack until I was 11, but now I’m off it. Ever since then they call me a miracle. Now I’m 13 and I’m doing better. I have to a have a heart cath ever year or two but other than that I’m doing great.


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The National Organization for Rare Disorders (NORD) awarded PHA the Abbey S. Meyers Leadership Award in 2012 for outstanding service to PHA members in advocacy, education and other key areas.